Why aren’t we talking about living with chronic illness during your PhD?

I have accumulated many, many notches on both the ‘diversity’ and ‘adversity’ scoreboards in my life. When a new hardship rolls around I am experienced at how to cope:

  • Step 1: Grieve. All seven stages.
  • Step 2: Find a community of people also afflicted by my hardship, whether online or off.
  • Step 3: Rebuild my life around this hardship with the support of those found at step 2.

So when I developed a chronic illness and associated disability in the second year of my PhD, one of the most comforting thoughts was ‘Well, maybe I’ll make some new (also disabled and completing a PhD) friends out of this!’

It turns out that this has been harder than expected! First, I scoured my University’s website for resources or services. A disability counselling service is available, and is helpful, but is not specific to higher degree research. The Graduate Research School makes no mention of disability on their website. Prominent PhD support blogs, such as the Thesis Whisperer, PhD Life, and Get a Life PhD, are silent on the topic. I couldn’t find much of a hashtag community on Twitter either. Broader communities do exist, such as #phdchat (for PhD students) and #spooniechat (for people with chronic illness), but very little to combine the two.

I did come across the wonderful PhD(isabled) blog, but this has been dormant for over a year and is hosted in the UK where the disabled PhD experience is very different to Australia (they have a Disabled Student Allowance!) Besides, why should a discussion of the added struggles of disability and/or chronic illness be limited to specialty blogs? Indeed, a very large proportion of people doing a PhD must surely live with chronic illness – just like the general community, right?

There is no denying the double-layered Valley of Shit that the combination of chronic illness and a PhD provides: it is undeniably awful. Whether the illness brings pain, depression, fatigue, anxiety, decreased mobility, endless appointments or some glorious combination of these, it makes an already difficult journey more difficult. It might make it hard to concentrate, to conduct field work, to go to workshops or conferences, to attempt networking, or to do any other essential requirement of a PhD. A myriad of additional support is required, most importantly a supervisor who is able (better yet: trained!) to provide at least some support for unwell students.

I recently tweeted out asking for other disabled PhDs to contact me and was overwhelmed by the response. Obviously we are out there, and probably many people have a better established support network for this than I do. But what if they don’t? What if we’re all just struggling through on a solo journey, with no acknowledgement of the extra-phenomenal nature of our achievements?

Maybe I am alone in this wish, but I would love to see a better network of disabled PhDs. I would love to see some resources about how to manage. And I would love to see PhD support services acknowledging that we exist. I think we deserve that.

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The real challenge of a 12 Week Challenge

Losing weight is great.

There are so many good things that accompany losing weight, and you’ve heard them all before: reducing your risk of disease, improving fitness, helping your mood, and, most importantly of course, being skinny instantly makes you a total babe.

For me, after struggling with obesity for all of my childhood and adolescence, all I could ever think about was how much better my life would be if I could just lose weight. Like, in my young and closeted head, boys liking you when you’re fat just doesn’t happen.

And so, after struggling to lose about 5kg on my own, I was pretty damn excited when I learned that my gym, Goodlife Health Club, would be running a 12 Week Challenge. Eureka! Weekly group workouts, workshops about nutrition and a chance to work with a personal trainer every week. I’d be SKINNY and HAPPY in no time!

Now don’t get me wrong, I loved my time in the 12 Week Challenge. In fact, I loved it so much that I did it twice – one in late 2012 and one in early 2013. I made some incredible friends, got advice that changed my eating habits for the better and lost about 15kg all up. More importantly, I became fitter than I ever thought possible. I even completed my first half marathon. Fitness wise, I easily had the most drastic transformation of my group, both times I completed the challenge. I went from one of the least fit to one of the fittest.

But I didn’t win.

Luckily, I couldn’t give a crap. I’m the least competitive person you’ll meet (any kind of competition makes me nervous and sweaty and emotional). I thought it necessary to write this piece, though, because future participants need a warning: you probably won’t win either.

The reason is that the 12 Week Challenge creators seemingly attended the Biggest Loser school of health and fitness. They claim to take a range of factors into consideration when choosing a winner: weight loss, fitness, a personal essay, and input from trainers. But it’s just not true. Truth is: it’s all about the photo. To win, you’ve gotta lose a fuck ton of weight and basically look like half of the person you were at the beginning.

Below are the before and after photos of one club winner:

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She looks fucking incredible, right? I take my hat right off to this girl because jesus that must’ve taken a Herculean effort.

I don’t want to take anything away from her or other winners of the Challenge, but focussing on the outward transformation of Challenge participants is harmful. Participants need to know from the start: you probably won’t experience this kind of transformation. Just like The Biggest Loser, crowning winners based on their photo alone gives challengers the misconception that it is realistic to lose a significant amount of weight in a short period of time. It isn’t. It’s not even effective: 95% of people who lose weight quickly put it back on, and then some. It also sets people up for failure. A friend of mine worked her ass off, lost a bunch of weight, and had a psychological transformation like no one else in her group. But, she didn’t look different enough. She was devastated when she didn’t win.

Participants in Michelle Bridges' 12 Week Body Transformation get a pat on the back for big weight loss
Participants in Michelle Bridges’ 12 Week Body Transformation get a pat on the back for big weight loss

The marketing of challenges like this and Michelle Bridges’ 12 Week Body Transformation love to peddle the old story that if you lose lots of weight, you are going to be happy. I bought it hook, line and sinker. And while losing over 30kg in the last three years had made me healthier, it hasn’t necessarily made me any happier.

I learned that exercise is a natural anti-depressant, so I guess my mood has improved. But I think there will always be things that I want to change about my body. I still struggle with depression, and I’ve had my heart broken 3 times since then. My self esteem has improved, but that’s almost certainly had nothing to do with my weight: in the same time period, I finished Uni, got a job, left my crappy boyfriend, came out of the closet and basically got a life. More importantly, I learned the very important lesson that size has absolutely nothing to do with beauty. And I’m certain that my wonderful girlfriend would love me no matter my size.

Celebrating non-appearance related achievements is important for so many reasons. For starters, they take fucking hard work. Additionally, getting stronger, fitter and more active has so many more benefits than just being skinny ever will. It would also help to fight the stupid myth that you need to be thin (but not too thin, jeez) to be beautiful, confident, worthy, loved and happy. You don’t. You are all of these things already, no matter your size.

So despite being a loser, I choose to consider myself a winner. HIGH FIVE!